Which was better? To be past any awareness of your condition—or to be sinking slowly into it, still conscious? I wondered what the point was of trying to extend the longevity of the human body before we knew more about preserving the mind. How much would I understand when I was put in some institution like this? Ellen swore that she would take care of me at home, and I knew she meant it. But I also knew that in the end, she would not be able to do so, that this was my fate I saw here before me.
Visiting my mother was an ordeal to me now. And yet it also felt oddly soothing to just sit with her in silence, while she patted my arm and smiled at me, saying little. It occurred to me that she was tracing the path I would follow. It reminded me of The Vanishing, that creepy European film in which a man is so guilt-stricken over not knowing what became of his lover that he allows her psychotic killer to kill him in the same extended, horrifying manner, just so he can know what she experienced. When my mother first went to live at Landmark, my sister persuaded her to give up her car; her deteriorating physical skills made her a menace to herself and to others on the road. But Pam gave her a few weeks first to get used to the idea, to ease her transition to living on her own, in a strange town, at the age of 75. My mother would usually drive back to Rockport, a place she loved, a place where she had lived for nearly 40 years, and where she no longer belonged. There she would just sit in her car, out on the town wharf, and watch the gulls circling and diving over the harbor. I often thought of her there, and now I understood that I would, one day, know what she was going through.
A Huntington’s drug trial materialized late last year at a Mass General clinic up in Charlestown, Massachusetts—the first interventionary test ever, for at-risk subjects who as yet had displayed no symptoms of the disease. I volunteered immediately. The trial consisted mostly of taking daily supplements of creatine, the bodybuilding drug, which, it was thought, might strengthen and extend the life of neurons. It wouldn’t “cure” the disease, but at my age, preserving as many brain cells as possible—buying time—might prove almost as beneficial.
The first step was another battery of tests, starting with an MRI. When it was over, I got to see a picture of my brain for the first time. Dr. Rosas, who runs the program with Dr. Hersch, her husband, told me that there were no visible signs of Huntington’s yet and pointed out the caudate nuclei, the parts of my brain that were most likely to shrink first. They lay along the edges of the pool of cerebral-spinal fluid that separates the left and right hemispheres of the brain—an area that looks like a pair of dark wings on the MRI, delicate and beautiful. I stared at them for a long time, thinking of how someday the wings would lose their shape as my brain shrunk and they expanded, leaving only more of the blackness.
There was something else on the scan as well. A little white circle, maybe half the size of a dime. Dr. Rosas wanted to know if I’d had any headaches or violent seizures recently. I had not, but it seemed the suspicious little dot could be a tumor in the making. More tests would be required, through my primary-care physician back down in New York. Oh, and it also seemed that I had a cataract in each eye.
I left the clinic in Charlestown before they could diagnose me with malaria or dengue hemorrhagic fever. It took most of a month to get a more detailed cat scan and learn the results. I didn’t really think I had a brain tumor, since I didn’t have any symptoms. I told myself, half-joking, I cannot get two brain diseases in the same year. But I knew enough now not to try to outguess the tests, and the waiting began to drag on me. A few days into the New Year, I went to get those cataracts looked at. They proved to be no real problem, so small now there was nothing to be done but wait for them to grow. Still, coming back from my ophthalmologist’s, I could barely see through my dilated pupils; struggling to dial the number on my cell phone for the MRI results that were due back that same day. Staggering blindly up Riverside Drive, on a blustery January day, the wind whipping at my face and hair, I had to laugh, thinking how my life was turning into a road production of King Lear.
This time, the news was good. I didn’t have a brain tumor. The little white dot was nothing at all. One brain disease to a customer. There was life, there was hope. There was the recognition that all I was going through—the torment of an aging parent, the knowledge that I would likely follow in her footsteps—was really nothing that unusual in our America of aging seniors and genetic testing. What was to be done but to make the most of it?
Back at home, I looked at the scan with my wife. “I’m going to miss that brain,” she said.
“I know,” I told her. “I’m going to miss me, too.”